This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.

jimmylegs wrote:in 2006 i remember finding a study that specified immune system action of interferon beta, and that 1,25dihydroxyvitamind3 was found to have the same action on the immune system. i've tried looking for it a few times since with no success. would love to track that sucker down and have another look!

Advertisement

MarkW wrote:My logic of taking 5,000 iu a day stems from human evolution. Humans (spreading out from East Africa) were hunter-gatherers then farmers who lived in sunlight for much of their lives. They received Vit D3 (not D2) from sunlight in a fairly even manner.

Standing naked at noon with full UV-B exposure as you would have in East Africa year around, your body would make 1,000 IU a minute, but only up to a limit of 20,000 IU for the day unless you have greater need, the most studied being pregnancy and bone growth where the body allows you to make more.

So wouldn't natural or evolutionary history suggest that 5,000 IU is on the low end while the "natural" number is closer to 20,000 or even half that.

This translates into 25(OH)D levels around 230 nmol/L (88 ng/ml) which may well be where the base line is. It could be that people with a vitamin consuming disease such as MS might even need more than this.

But this really doesn't tell us how much someone with MS needs, how the need varies between sexes, ages, MS activity levels and so on.

Sadly, it seems that none of the research really answers questions like this. People keep concluding that Vitamin D doesn't work when what might not be working is their studies which only prove that the low levels they have tested are probably inadequate.

Ed

I just went back through the comments etc and I guess it's because I have a low IQ, but, are we learning that PwMS use MORE Vit D than a 'normal' person and that is why we need to monitor and maintain 'good levels' for QOL and symptom management?Or is it that we have a dysregulated VDR causing low readings?Or both?

My first test is back and it is Vit D 95 nmol/L (75-140)

I have been supplementing for 3 months 1000ui/daily plus (first month 50,000/ every ten days) then 25,000/ten days and it is now mid/late summer and I spent some time outdoors every day for Vit D reasons.

So I wonder what my Vit D usage is compared with a 'normal' (have to find one first).

"Vitamin D3 markedly reduces risk of conversion to MS"19th December 2012MS Australia has launched its large trial looking at various doses of vitamin D3 and their effect on preventing conversion to MS from clinically isolated syndrome (first attack of demyelination not yet diagnosed as MS). That trial will not report until 2017. In the meantime, researchers from the Eye Research Centre at the Isfahan University of Medical Sciences in Iran have looked at this important issue in a slightly different way. Optic neuritis is well known to be a common first event in MS, being the first thing people with MS present with in 20% of cases, and of people who develop optic neuritis, 50% go on to be diagnosed with MS. These researchers enrolled 30 people with an attack of optic neuritis into a randomised controlled trial, where half received vitamin D3 at a dose of 50,000IU a week, or around 7,000IU daily, and the other half received an inactive placebo. They were seeking to determine whether a reasonable dose of vitamin D3 prevented conversion to MS, and if so, to what extent. The results are incredibly exciting!Those receiving D3 had nearly a 70% reduction in risk of developing MS, and also had significantly fewer new brain lesions. This is one of the first studies to use adequate doses of vitamin D3, and this may explain why such a strong result was found. Even though this study was small, it provides compelling evidence of the benefits of vitamin D3 in preventing MS. After this study, even without the results of the Australian study, it would be prudent for doctors making a diagnosis of optic neuritis to start supplementation with vitamin D3. Many doctors would consider any first demyelinating event now warrants commencement of supplementation with D3, given its lack of side effects, and its potential health benefits over and above reduced risk of developing MS.The full paper is not yet available, but the summary can be found at http://link.springer.com/article/10.100 ... 012-0166-2http://www.overcomingmultiplesclerosis. ... ion+to+MS/

NZer1 wrote:I just went back through the comments etc and I guess it's because I have a low IQ, but, are we learning that PwMS use MORE Vit D than a 'normal' person and that is why we need to monitor and maintain 'good levels' for QOL and symptom management?Or is it that we have a dysregulated VDR causing low readings?Or both?

My first test is back and it is Vit D 95 nmol/L (75-140)

I have been supplementing for 3 months 1000ui/daily plus (first month 50,000/ every ten days) then 25,000/ten days and it is now mid/late summer and I spent some time outdoors every day for Vit D reasons.

So I wonder what my Vit D usage is compared with a 'normal' (have to find one first).

Regards,Nigel

Well Nigel, I passed the IQ test in my first year of school. I was out of school for two weeks getting a rabies injection everyday because I had been bitten by a mongoose that was thought to possibly be rabid. When I returned to school after this ordeal, my teacher sent me to the principal's office to make up the IQ test that I had missed.

The principal removed a metal pin from her hair and handed it to me and instructed me to go stick in an electrical outlet. I said, "No, I'll get shocked."

She said, "Okay, you passed your IQ test. Now get back to class."

I think the answer is that we don't know. We do have some limited evidence that people who are prone to MS appear to be using it at a very high rate as they move from no visible clinical signs, through Clinically Isolated Syndrome to Clinically Definite MS.

We also know that people with MS appear to have a set of genes that are involved in various activities regulated by MS that make it hard for things to go right.

And we know from other studies that other things effect what happens to genes such that two people with the same genes, ie, identical twins, may not have the same outcomes.

All of things could be factors.

However, we can see if you are maintaining vitamin D levels compared with "normal" people by seeing whether a particular level of intake holds, or declines.

We can measure what it takes for healthy controls to increase 25(OH)D levels and see whether your intake of vitamin D had the same effect.

If it doesn't, we really won't know why, but at least we can say that you are or are not different from normals.

We eagerly await your previous number!

Ed

P.S. Not to get personal, but how much of your body has been exposed while you are outdoors? Sunscreen? You can estimate your production at 1,000 IU per minute around noon, but that assumes pretty full body exposure.

@nz, i used to have to take more d3 to get a particular result. so you could surmise that i needed more. in fact i had insufficient zinc for absorption. not to suggest it's the case for everyone, but i definitely used to be zinc deficient and needed lots of d3. now i am zinc replete, and absorb d3 very well. perhaps as well as a 'normal' person

My first point is "Non MSers are average". Let's not use the term normal when comparing them to us (pwMS).As Ed says natural D3 levels in outdoor living humans in Africa should be high but I know of no data on this. The key is D3 blood levels not D3 dose and Jimmylegs gives us the Zinc example. I do not know if pwMS 'use more D3' in answer to Nigel's point. However, higher D3 in blood means less lesions and problems for pwMS. D3 is an economic 'no-brainer' for pwMS, speaking as a management consultant.MarkW

Hi Mark, the thing I read in these research results is that Vit D is in the picture, simplistic view but I believe it is reality.Until there is understanding of the Vit D involvement supplementing is of little use. At this time if people spend time in the Sun to increase levels and if that supports the belief that there is going to be increases in blood Vit D levels, then there is a start point. If that knowledge is as assumed eg that levels of blood Vit D increase then logically it would be time to see what else changed with the action of going into the Sun. I think that there is good reason to study the effects of mentally taking better care of ones health. The simple action of a positive attitude and taking care of ones needs in diet and exercise probably shows equal or better health outcomes.Statistics and old school thinking are not giving answers to questions and most importantly mono treatments or beliefs that mono improvements will help individuals is being proven to fail the academic assumptions.Combinations and their sub-sets are giving openings in understandings when Science looks at the Spectrum of Health.

If we look at the Vit D issue and consider the position on the Planet (latitude and longitude) there is another factor that tips the balance and that is diet. The food eaten at the location (on the Planet) of the Vit D/UV blood levels is going to make a big influence. Food combinations and whether 'whole' foods, herbs, variety, seasons will all have a major impact of the Vit D status. So is the question Vit D plus 'x' or simply Vit D alone?Reading Terry Wahls and George Jelinek's outcomes from diets that are intensely monitored are making far bigger impacts than Vit D alone.Why?

Found a comment that I think is very important in the Vit D puzzle. The concept is to get the Vit D blood level up, yet the reason hasn't been found.If the skin is producing the precursor for Vit D AND is the Immune barrier for the body which is the important factor, the Vit D final process measurement or the need for Sun exposure on the 'Immune barrier'? Levels of sunlight and environmental temperatures of various Latitudes on the Planet may be more complex than assumed, eg low sun light is also going to be an environment for specific types of immune system attacks and the temperatures in that environment will also effect the types and volume of bacteria, viruses and pathogens in general.Assumptions from a singular view of the Vit D deficiency problem may have put Supplementing Vit D into only a partial gain situation as the entire process of Vit D production is required for a Wellness benefit. Supplementing Vit D may not benefit the portion of the puzzle we require for MS improvements without direct Sun exposure? Quote"Antimicrobial peptides and the skin immune defense system.Our skin is constantly challenged by microbes but is rarely infected.Cutaneous production of antimicrobial peptides (AMPs) is a primary system for protection, and expression of some AMPs further increases in response to microbial invasion. Cathelicidins are unique AMPs that protect the skin through 2 distinct pathways: (1) direct antimicrobial activity and (2) initiation of a host response resulting in cytokine release, inflammation, angiogenesis, and reepithelialization

Cathelicidin dysfunction emerges as a central factor in the pathogenesis of several cutaneous diseases, including atopic dermatitis, in which cathelicidin is suppressed; rosacea, in which cathelicidin peptides are abnormally processed to forms that induce inflammation; and psoriasis, in which cathelicidin peptide converts self-DNA to a potent stimulus in an autoinflammatory cascade.

Recent work identified vitamin D3 as a major factor involved in the regulation of cathelicidin. Therapies targeting control of cathelicidin and other AMPs might provide new approaches in the management of infectious and inflammatory skin diseases.

I really think this is the crucial reason why getting some of your vitamin D made right on the surface of your skin right where it is needed is essential for immune function. These Cutaneous antimicrobial peptides CAMP genes are incredibly powerful. There are cells on your skin surface that can do the whole business from cholesterol through to the active hormone without bothering liver or kidneys. We wouldn't have evolved this capacity if it hadn't provided evolutionary advantages."http://www.ncbi.nlm.nih.gov/pubmed/19895218

afaic large doses of d3 should not be necessary if the absorption is happening properly. so as for "So is the question Vit D plus 'x' or simply Vit D alone?" i would decidedly say vit D plus "x", y, z, etc etc etc. list to include everything else that is typically low in ms patients. all factors working together. and, i don't think throwing d3 at a broken system is the answer. you may force the levels up but i used to have to take three times as much d to get my levels there, as i do now with the rest of the puzzle in place and the various beneficial interactions working nicely.

so for the d3 you can see your level of 95 is suboptimal. likely due to low zinc.

re the zinc, the lab is using patient values to describe that normal range (ie 9-17). the research range according to the WHO is 11.5-18.5. so you're 0.3 above the bottom of the internationally accepted normal range. even though it looks like you have a comfortable buffer between your zinc value and the 9 at the lab's bottom end, you don't. it's the usual deceiving situation. i feel sorry for all the folks who had zinc tested, came in above 9 but below 11.5, are actually deficient by any standard except this lab's, and were told their levels are normal. even though all that means is that their levels match other sickies who showed up there.

oh fyi zinc is naturally highest in the morning so if you want to know the worst case scenario, have your testing done as late in the afternoon as possible

Thanks Legs, I will look at Zinc and see what is logical, I'm guessing diet is best but supplement to push the levels up at the same time?

Interesting what the Vit D would have been if I had not been supplementing and spending a little time outdoors, It's mid summer now! Supplementing 2000 ui daily and 25000 every ten days! Body is using higher than average to 'deal' with my health package? I will try the 50000 every ten days and see if I still get an apoptosis effect because of the ABx protocol.

The literature warns that Vit D dosing will reset the Natural apoptosis timing that the CPn has modified in the host cells, so there will possibly a die off of host cells as well as CPn cells plus the secondary porphyria symptoms.

note the overlap between healthy copper and healthy zinc foods. there may be a way you can incorporate these into your diet on a weekly rotation.

one way you could go about it is to track your zinc and antinutrient intakes over the course of a week. then look at how many days you might reasonably need to supplement to get to an equivalent of 50x7-350mg of zinc intake per week. perhaps you only need to supplement every other day.

if you purchase a zinc supplement ensure it is balanced with copper. eg 50mg zinc to 2mg copper. you'll notice that lines up with relative amounts available in foods from the linked lists above.

be careful with your d3 intake if you start boosting zinc via diet mods and supplementation! arrange for a retest of zinc and d3, to evaluate changes in your d3 dose response.

Who is online

This site does not offer, or claim to offer, medical, legal, or professional advice.
All treatment decisions should always be made with the full knowledge of your physicians.
This is MS does not create, endorse, or republish any content.
All postings are the responsibility of the poster. All logos and trademarks in this site are property of their respective owners. All users must respect our rules for intellectual property rights.